Privacy & Privacy & ConfidentialityConfidentiality

By Ann Richards, Ph.D. By Ann Richards, Ph.D. West Virginia UniversityWest Virginia University

adapted from a presentation byadapted from a presentation byBy Joan SieberBy Joan Sieber

California State University, HaywardCalifornia State University, Hayward

The Privacy & Confidentiality TestThe Privacy & Confidentiality Test

Privacy testPrivacy test: Does the subject think : Does the subject think the information sought is any of the the information sought is any of the researcher’s business? Is the subject researcher’s business? Is the subject comfortable in the research setting?comfortable in the research setting?

Confidentiality test:Confidentiality test: Is the subject Is the subject satisfied with the methods that will be satisfied with the methods that will be used to control who can have access used to control who can have access to the data?to the data?

People want to control…People want to control…

The time and place where they give The time and place where they give information.information.

The nature of the information they give.The nature of the information they give.

The nature of the experiences that are given The nature of the experiences that are given to them.to them.

Who receives and can use the information.Who receives and can use the information.

PrivacyPrivacy

Privacy refers to Privacy refers to personspersons and to and to their interest in controlling their interest in controlling access of others to themselves.access of others to themselves.

(Confidentiality refers to (Confidentiality refers to datadata.) .)

The IRB’s DilemmaThe IRB’s Dilemma

The Federal Regulations do The Federal Regulations do notnot Define Define Privacy. The Guidebook from the Office for Privacy. The Guidebook from the Office for Human Research Protections (OHRP) says:Human Research Protections (OHRP) says:

““Decide whether there is an invasion of Decide whether there is an invasion of privacy. There are no criteria. Base your privacy. There are no criteria. Base your decision on your own sense of propriety. “decision on your own sense of propriety. “

Ability to regulate access of others to Ability to regulate access of others to

oneself (privacy) variesoneself (privacy) varies with:with:

StatusStatusRoleRoleVerbal skillVerbal skillStage of Stage of

developmentdevelopment

ContextContextCultureCultureTechnology Technology

used in the used in the researchresearch

What is Private Also Varies with:What is Private Also Varies with:

GenderGender EthnicityEthnicity AgeAge Socio-economic classSocio-economic class EducationEducation Ability levelAbility level Social/verbal skillSocial/verbal skill

Health statusHealth status Legal statusLegal status NationalityNationality IntelligenceIntelligence PersonalityPersonality Relationship to Relationship to

researcherresearcher

WAYS TO RESPECT WAYS TO RESPECT PRIVACY IN RESEARCHPRIVACY IN RESEARCH

Informed consent – if effectively done!Informed consent – if effectively done! Knowledge of subject’s culture.Knowledge of subject’s culture. Rapport and sensitivity to individuals.Rapport and sensitivity to individuals. Research associates from that culture.Research associates from that culture. Extensive consultation with appropriate Extensive consultation with appropriate

professionals & peers of subjects.professionals & peers of subjects. Analyze the research context & technology.Analyze the research context & technology.

What is Confidentiality?What is Confidentiality?

Confidentiality is about Confidentiality is about datadata (not people), (not people), and about agreements and procedures and about agreements and procedures for limiting the access of others to data.for limiting the access of others to data.

There are ever-increasing methods of There are ever-increasing methods of assuring confidentiality, along with ever assuring confidentiality, along with ever increasing high-tech methods of increasing high-tech methods of breaching confidentiality.breaching confidentiality.

It is hard to find theIt is hard to find themany techniques formany techniques forprotecting confidentiality:protecting confidentiality:

Inter-file linkageInter-file linkage Error inoculationError inoculation Statistical Statistical

strategiesstrategies Top codingTop coding Restricted public Restricted public

use datause data

Restricted access, Restricted access, enclaves, archivesenclaves, archives

Certificates of Certificates of ConfidentialityConfidentiality

Ethical editing of Ethical editing of qualitative descriptionsqualitative descriptions

Data brokeringData brokering

Inter-file LinkageInter-file Linkage

Researcher wishes to link data with 50 subjects Researcher wishes to link data with 50 subjects with information from police recordswith information from police records

Subject provides data and alias to researcherSubject provides data and alias to researcher Subject provides the police with his name and Subject provides the police with his name and

aliasalias Police provide requested information with aliasPolice provide requested information with alias Researcher does the analysisResearcher does the analysis

Statistical StrategiesStatistical Strategies

Insert random error into dataset that still Insert random error into dataset that still allows useful statistical analysisallows useful statistical analysis

Person roles a die to determine the Person roles a die to determine the answeranswer For example someone asks an individual if For example someone asks an individual if

they have used drugs in the past month. The they have used drugs in the past month. The individual roles a die and a corresponding individual roles a die and a corresponding number elicits a yes or no responsenumber elicits a yes or no response

Top-CodedTop-Coded

dataset is one for which the upper bound dataset is one for which the upper bound is not known. is not known.

This is often done to preserve the This is often done to preserve the anonymity of people participating in the anonymity of people participating in the survey survey if a survey included a person with wealth of if a survey included a person with wealth of

$51 billion, it would not be anonymous $51 billion, it would not be anonymous because people would know it is Bill Gatesbecause people would know it is Bill Gates

http://en.wikipedia.org/wiki/top-codedhttp://en.wikipedia.org/wiki/top-coded

Restricted Public Use DataRestricted Public Use Data

Includes individually identifiable Includes individually identifiable information that is confidential and information that is confidential and protected by lawprotected by law

• http://nces.ed.gov/statprog/2002/glossary.asp#public-filehttp://nces.ed.gov/statprog/2002/glossary.asp#public-file

agreement spell out the conditions of agreement spell out the conditions of use pertaining to respondent use pertaining to respondent confidentiality, as well as measures confidentiality, as well as measures required for the physical safekeeping required for the physical safekeeping of the restricted datasets when in the of the restricted datasets when in the researcher's possessionresearcher's possession

• http://www.icpsr.umich.edu/access/restricted/http://www.icpsr.umich.edu/access/restricted/

Restricted Access and EnclavesRestricted Access and Enclaves

These restricted data have confidentiality These restricted data have confidentiality issues for which there is heightened issues for which there is heightened sensitivity to disclosure, as indicated sensitivity to disclosure, as indicated either by the depositor or the holdereither by the depositor or the holder

A researcher applies for access to these A researcher applies for access to these data, and if approved, conducts the data, and if approved, conducts the analysis under very controlled conditions. analysis under very controlled conditions. Analytic output and notes taken during the Analytic output and notes taken during the research process are reviewed by archive research process are reviewed by archive staff before being released to the staff before being released to the researcherresearcher

http://http://www.icpsr.umich.eduwww.icpsr.umich.edu/access/restricted//access/restricted/

Ethical Editing Ethical Editing of Qualitative Dataof Qualitative Data

Assume identity and location will be discoveredAssume identity and location will be discovered Is language descriptive or judgmental?Is language descriptive or judgmental? Describe cultural context and then specific Describe cultural context and then specific

characteristicscharacteristics Negative stereotypes may affect similar peopleNegative stereotypes may affect similar people Is the research site usable again?Is the research site usable again? Have some subjects from your study site read Have some subjects from your study site read

information for accuracy.information for accuracy.

Data BrokeringData Brokering

Data is held and managed by othersData is held and managed by others Negotiate exchange agreementsNegotiate exchange agreements Provide information about data resourceProvide information about data resource Enable access Enable access

What Lies Ahead?What Lies Ahead?

Electronic data storageElectronic data storage Using web-medias to conduct face-to-face Using web-medias to conduct face-to-face

interviewsinterviews Technology privacy activistsTechnology privacy activists